Introduce yourself

[Abi]

Hey all

I was diagnosed with CKD (Stage 5) when I was 24, and I’m now 29 and post-transplant. While I’m incredibly grateful for my transplant, I’ve faced some recent health challenges that have reminded me how ongoing and complex this journey can be.

I’m hoping this space gives me the chance to connect with others who’ve had similar experiences—especially those who were diagnosed at a young age. That time in life can feel particularly isolating, and it means a lot to be in community with people who truly get it.

I’m really passionate about creating spaces of belonging and amplifying voices that often go unheard, so I’m genuinely grateful that this platform exists. I’m here for connection, shared understanding, and to both give and receive support along the way!

[Jonny_admin]

Welcome to Kidney Community @Lillieboo2014. Life certainly does sound very full on for you at the moment. I hope this online community provides a safe, supportive space for you and that all progresses well with your sister’s kidney donation.

[Scarlettbelle]

Im Scarlett, I’m 32, I had my right kidney removed in October due to Spesis, and Kidney damage. I’ve had many infections since childhood. I have had kidney inflammation and infection since then, and I’m currently stage 2 but my function is dropping quite rapidly at the moment, so having daily monitoring and frequent testing. I cant have any more IV antibiotics as this is damaging my kidney. Very lost and wish someone had answers.

Im a mother of a one year old and feeling very scared at the moment for the future.

[Jonny_admin]

Great to have you as part of the new online community @Abi. So good to hear about your enthusiasm for connection and belonging and I hope Kidney Community provides this for you, as well as giving you the chance to support others.

[Jonny_admin]

Welcome @Scarlettbelle. So pleased that you found this community. I hope those feeling of being lost and scared can be helped at least a little by connecting with people in this space who are going through something similar. I’ve already replied to a few other new users who are mothers of young children, so you might want to consider creating a new topic for mothers, perhaps under the category ‘living with kidney disease’.

[Paula]

Hi, I’m Paula. I found out my kidney function was severe in July 25. It dropped from 40 to 21 and then 9. I spent a week in hospital , my potassium was also high. I was started on steroids and immunosupprecants which raised my kidney function to 19.My labs last week were 18. I just feel exhausted all the time. Have to do a little housework then rest for a while. However I am feeling a lot better than before. Great to talk to you all!

[Birdblue7-9]

Hi all, I’m Lynn, diagnosed two years ago stage 3b..now couple of points away from stage 4.Interested to know any pointers for what seems to be the endless tiredness,

[Dreamplayer]

Hello all I’m mark donated a kidney in 1995 to brother. Still active still drink have yearly checks and had a tattoo of a shark on my scare as I had 22 metal stitches.

[glyndwr]

Hi my name is Glyndwr from south wales, had AKI in 2018, had a biopsy to confirm that it’s IgAN., was Put on dialysis for a few months and the filter rate increased to top 40’s, but since then the filter has reduced to 14 %. Had a fistula done in 2024 but but not on dialysis yet.

[JEW]

Hi I’m JE I have kidney failure and I have been on dialysis for five and a half years. I also have diabetes (type 2) controlled by lots of insulin, and unstable angina. I find it hard to get around as I have severe arthritis in my knees.I am 75 years old.

[ceinwenwilson]

Hello

I know that our kidneys decline as we age but the fact that you have new symptoms is enough for further investigation. My mother-in-law is in her 80s and experienced back pain and had tests on her kidneys. Why shouldn’t you have the right to know what has changed and be informed?

[Anthonytindall]

Hi my name is Anthony I have been on dialysis for just under 2 year at a clinic in New Cross in London I am partially sighted so cant do it at home but manage to get around ji am only 61 so this rubbish is very limiting used to have at least 2 holidays a year so not being able to travel is a real pain trying to get on the transplant list but still hoping it will happen soon any way take care and keep smiling

[Moss]

Hi,

I’m Moss.

I have had health issues for 20 years, ever since my heart attack at 39.

Four years ago, i collapsed at home, in the middle of the night and was rushed to hospital. It turned out that I had an episode of low blood pressure and that i had pancreatitis. I had a CT scan, but the consultant couldn’t find the time to speak to me (his understudy told me) as he was late for his tee time . It was a shame he didn’t look at the scan results properly before he went.

one year later, i had a colonoscopy (i did say i have had health issues for a while) as part of the bowel cancer screening program, but they couldn’t see well enough so they arranged a CT colonoscopy. The results were clear, but did mention that the lesion on my left kidney had grown slightly since they flagged it up a year earlier.

Turns out that i have a Tumor on my kidney, but as he was late for golf, he didn’t read that far down the scan results, so i wasn’t told. They knew i had cancer for a year and didn’t tell me.

Due to my heart issues, I wouldn’t survive removal surgery, or even a biopsy, so the plan is to scan at 6 monthly intervals with a follow up consultation to discuss results.

The Urologist is as attentive as the Gadterenterologist. They refuse to document anything - i have to get a record of the consultations, i must not be deserving of them. They told me that i have cancer, but as they don’t have the biopsy, they won’t write it down.

My last CT scan was at the beginning of October, but the consultation has been cancelled 3 times, meaning my 6-monthly scan will be 6-months old, or to use a technical term, obsolete, by the time i eventually see them.

I had a call today to attend a cancellation tomorrow, so they are obviously happy to work from data that is no longer current.

To some, a slow growing cancer is a result, and I imagine that i am in a better position than many, but stuck in limbo like this is not a good place to be.

[Jock]

Hello Folks

I am Andy, renal issues since 1985. had a transplant from my brother, lasted about 32 years until I had a brain lymphoma had to stop meds. Kidney lasted about another 5 years. Had PD for about 7 months then fortunate to have a second transplant 30.12.22. Still going ok to enable to keep full working. Considering retiring now at 72.

[Leigh]

Hi, I’m Leigh and I’ve got Alports syndrome from my dad. I was on dialysis from just after my 30th birthday and I had peretonial, then haemo via an emergency neckline, then peretonial again before eventually getting a live transplant. I’m now in stage 4 renal failure again hovering between 16 and 20 and waiting to find out if my husband can give me one of his kidneys next year. I have worked full time throughout and have a 7 year old and I’m just generally exhausted but determined to have a full life

[Kwez04]

Hi everyone, I’m Kelly. I’m joining this group because both my husband and my son have been diagnosed with FJHN (an ADTKD condition).

My husband had a successful kidney transplant 7 years ago and our son is currently living with reduced kidney function (below 50%). As a family we’re learning as we go, and it really helps to connect with others who understand the realities of this condition.

I’m looking forward to learning, sharing experiences, and supporting others where I can. Thank you for having me.

[DMM]

Like a bolt out of the blue, I was diagnosed with CKD 3a in November 2023 (age 64) when full bloods were taken after experiencing a severe heartbeat issue, which after hospital appointments with a cardiology consultant was diagnosed as an ectopic heartbeat, now under control with medication.

At my doctor’s surgery I was in total shock when my blood results indicated CKD, egfr of 48.

Since then I have annual bloods done at the doctor’s surgery. My egfr has remained the same.

It is only recently only that I have been trying to change my diet, for the better, and increase my egfr, but I am lost in my quest. I am surprised my doctor has not recommended a renal dietician to help with diet. I would love to sit down with a renal dietician and draw up a personal menu/diet plan that suits me. I get bogged down in searching websites and fed up with various CKD recipe books on Amazon that are quite often written by people who are not dieticians and have no personal renal experience. The books often contradict each other too. All very frustrating.

That’s my journey so far!

[Caz]

Hi everyone, I’m Caz, I’m about to turn 50 on Sunday (15th), I’ve had CKD all my life. I had a left Nephrectomy in January 2000 after years of reflux. I’ve been stage 3a for years but I’m slowly creeping up, my last few blood tests have put me at stage 4, I’ve got another blood test in a few weeks to check it again so we will go from there.

I hope you all are doing OK x

[Tania]

Good morning, I’m 50 years old I have been on dialysis nearly 3 years, first year was tough, in first year I had a total of 5 perma caths in my chest because they kept blocking also had 2 fistulas, by the end of the first year the 2nd fistula was good to use. I have just recently had to increase my treatment to 4 and half hours each session as I’m not getting a good enough clearance. Waiting to see my consultant to ask if I can go on HDF so I can get a better clearance. I’ve been on transplant list for 3 years but no calls yet, I’m type B negative blood group and been told I have a rare tissue type as well so could be waiting longer . I have had my story published in local magazine asking for live donor, no success as yet but got to keep trying.

It’s been a hard journey for me as I am a single mum to 2 of which both my children have disabilities, so juggling dialysis and caring for my children has been a challenge and the impact of my health has been hard for my children, we now have family support officer through social services which has helped. So if anyone is struggling don’t be afraid to ask for help weather it be family, friends or adult social services or even child social services if you feel you need help with the children because you may not realise it but young children can be classed as a young carer and they can arrange respite for them so they can do activities and have fun with other children and not have to worry about us.

[BLESSEDWOMAN_85]

Hi everyone, I am a registered clinical Dietitian, I help patients in the treatment, management and prevention of diabetic nephropathy and other diseases that is linked to the kidneys. I am glad to be here.